posted
Hello - I just received my Lyme, Western Blot, Serum results through LabCorp today. I have read many posts and a lot of information online...special thanks to AnnaL and Siciliano for their help thus far! I will list my results and a brief history and hopefully someone can advise on next steps.
Lyme ELISA: IgM - Equivocal. I believe level was 1.08, but did not get results from doc.
Lyme Ab IgG by WB: Only IgG p58 was present. Other 9 bands were absent. Of course this was negative per CDC.
Lyme Ab IgM by WB: Only IgM p41 was present. Other 2 bands were absent. Negative per CDC.
10 years ago in 1999 I was in Americorps NCCC, based out of Perry Point, MD and spent most of my 10 months of service in the woods of Maryland and New York...living in cabins and performing work in stream beds, shorelines, trails, etc. I got bad poison ivy and Scabies (horrible itch and gross...yuck), but do not recall a tick bite.
Since then, I have lived in the Seattle area and have spent a lot of time hiking in the Cascades and Olympics. From 1999-2008 I have always been extremely active and in good shape...hiking, running, cycling, etc....but I've also also felt like I was always coming down with something...nothing too severe, but always just a bit "off" no matter how in shape I was. Went to the doc often and felt stupid. Swollen glands, sore throats, nasal drip, fatigue, tired muscles, etc. etc.
Then around Oct/Nov 2008 I started to feel worse. My wife and I were about to have our first baby in Jan. 2009 and I had a lot going on at work, so I chalked it up to stress and an illness. Well, by early Feb 2009 I was exhausted...not just from having a baby. I had bad headaches, clogged ears, swollen glands, swollen eyes, strange vision issues (flahes), tired muscles, etc. Went to PCP and had elevated EBV titers and was told it was mono...6 months later in Summer 2009 I was still feeling terrible...went back to PCP, then allergist, rheumatologist, infectious disease doc, now a naturopath.
I have elevated EBV IgG and also IgM...high IgM for over 4 months now. I know IgG can simply mean past infection and will always show positive. Anyway, I finally asked ID doc to run Lyme test. Received WB results today and he said they're neg and he can't think of anything else to do for me. He admitted that IgeneX has shown positive results when WB thru Labcorp does not, but he said he sticks to CDC standards and that's that.
Can you please help me understand what my results mean and if I should indeed see an LLMD in the area? I have an appt with an LLMD later this month, but it will not be covered by my insurance and will be costly. I'm willing to pay the money given my suffering and frustration, but looking for some guidance as I navigate this path.
Also, could I have been bitten 10 years ago in the Northeast and felt minor symptoms for 8 years and then start to feel major symptoms over the past 15 months? Obviously I could have been ticked in the NW too.
I definitely have many symptoms (roughly 25-30 of those listed on the CANLYME.org site). Some days/weeks are better and I attempt to exercise, then some days/weeks I feel more exhausted and I need to take some naps to keep my energy level up.
Sorry for the long post. I thank anyone and everyone that responds!
Posts: 6 | From Seattle | Registered: Jan 2010
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posted
Just wanted to share a list of my current symptoms; I swear I'm not exaggerating. I guess I felt the need to add that disclaimer since I've started to feel like I'm crazy.
-Head, Face, Neck
*Headache, mild or severe *Pressure in head and eyes *Occasional twitching of facial or other muscles *Cheek or facial flushing *Stiff neck *Jaw pain or stiffness - has gotten quite bad this year *Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose
-Eyes/Vision
*Increased floating spots *Pain in eyes, or swelling around eyes and on eyelids, dark circles under eyes *Oversensitivity to light *Flashing lights/Peripheral waves/phantom images in corner of eyes
-Ears/Hearing
*Decreased hearing in one or both ears, plugged ears *Buzzing in ears *Ringing in one or both ears
-Digestive and Excretory Systems
*Irritable bladder *Irritable Bowels
-Musculoskeletal System
*Bone pain *Stiffness of joints, back, neck *Muscle weakness
-Respiratory and Circulatory Systems
*Shortness of breath, can't get full/satisfying breath *Unexplained chills *Heart palpitations or extra beats
-Neurologic System
*Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis *Pressure in the head *Poor balance, dizziness - strange vertigo only occasionally *Lightheadedness, wooziness
*Extreme fatigue *Swollen glands/lymph nodes *Symptoms seem to change, come and go *Never felt "normal" for past 10 years *Increased sweating over past 15 months...very unusual amounts
Posts: 6 | From Seattle | Registered: Jan 2010
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And it's not unusual to have been bitten years in the past, then gradually sort of 'fall apart'... that more or less happened to me.
Did your doctor test for co-infections too? The sweating/shortness of breath sound very babesia-like to me.
Posts: 584 | From NY | Registered: Feb 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
DSol,
For many reasons, your lab results do not mean a whole lot....testing methods are poor, they did not test for all bands, etc.
Lyme is a clinical diagnosis based on history and symptoms, not a lab test.
Ruling out lyme based on a CDC negative lab test is wrong.
What REALLY matters is your history and symptoms.
You should post for a LLMD on the Seeking a Doctor board and make an appt asap.
You have symptoms that could be lyme, babesia, bartonella, etc.
Follow your gut instinct and find a Lyme literate Doctor.
Make sure you read this paper...symptom list p 9-11, coinfection symptom info p 22-27....
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
It's actually quite likely that you have active, chronic EBV infection. See:
Patients with "high" antibody titers against HHV-6 IgG ≥ 640, EBV VCA IgG ≥ 640 and detectable EA Ab at 1:160 or HHV-6 IgG ≥ 320 if EBV VCA IgG ≥ 1280 and has detectable EA Ab at 1:160 (measured by the average of a minimum of two time points obtained during screening at least 3 weeks apart).
I would start with that. Your Lyme tests are less suspicious than your EBV tests. Get a copy of your EBV test results. Compare your results with the above info. If it does appear that you have high antibody titers according to that info, then talk with an ID doctor about the above info.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
DSol, sorry but LabCorp wouldn't know lyme antibodies if it bit them in the butt. Some are very fortunate and do get ++++ CDCs, but it seems to be rare.
I'd move on from that doc. It should state on WB test results that Lyme Disease is a clinical dx and MD should consider if sx are present.
So for this doc to say it's neg and not treating is your cue to move on and find LLMD. I believe there are many choices for those on the west coast.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Thank you, all, for your responses. I have made an appointment with an LLMD in Seattle later this month. I want to take this path as far as I can, and I feel that I definitely need to see an LLMD and receive the best lab test available. I appreciate you all taking the time to respond.
Best, Darin
Posts: 6 | From Seattle | Registered: Jan 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Good Darin. There is many reports of people testing
positive for EBV with Lyme disease. Which may be
one reason why you did not get a good result.
Virus' are known to skew results. Other than thst
they only test for certain bands, while Igenex
tests for all the bands. As far as progression of
symptoms the extreme nite sweats for me was a wake up
quick and find out whats wrong.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Thank you, Pinelady. My EBV IgM level has been high for the past 4 months at least. I have been told that this should normally go back to normal levels after 4-6 weeks, while the IgG levels will always test high since I have been infected with EBV at some point in my life. Do you, or does anyone, know if Lyme Disease could be causing my EBV IgM levels to be high? My thought is that perhaps I am fighting against Lyme, which is causing my immune system to react, thus causing me to continue producing IgM antibodies to EBV? I'm learning and appreciate any feedback. I'm anxious for my LLMD visit on 1/28 so that I can continue down this path. Thanks, all!
Darin
Posts: 6 | From Seattle | Registered: Jan 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would think that Lyme can shut your immune system
off allowing the virus to do whatever it wants. Yes
it should go down but who knows. I would not be
surprised it that is not all you have. There is not
that much they are sharing on this knowledge in the
literature. So I would find a good LLMD who does have this knowledge.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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